Beyond The myth
As scientists grapple with long Covid, it’s hoped they will uncover more about what causes other post-viral illnesses.
Health Article By Nicky Pellegrino
Originally published in the Listener, September 18 2021 edition, pages 36-37, and reused with permission
4 minutes to read
When Warren Tate’s daughter was 14, she came down with glandular fever. Instead of eventually recovering, her health worsened and she developed a cluster of debilitating long-term symptoms.
“She could walk only about 10m,” Tate recalls. “She was hypersensitive to light, had trouble sleeping, had lots of pain, was allergic to a wide range of foods and suffered from brain fog.”
No one could tell Tate and his wife what was wrong with their child. It was implied she was making it all up. “We got things such as, ‘Well, your daughter doesn’t want to go to school,’” Tate says.
This was 30 years ago, when few people had heard of chronic fatigue syndrome/myalgic encephalomyelitis (ME), and it was considered by most health professionals to be a psychosomatic disorder rather than an actual illness.
Tate, a biochemist at the University of Otago, knew there had to be a biological reason for all those symptoms, so he started trying to get his own research off the ground.
Funding has been hard to come by, with much of it coming from the families of those affected, but last year he had a breakthrough. Tate published two studies that showed differences at a cellular and DNA level among sufferers of chronic fatigue. It was proof at last that, far from being psychosomatic, this is a complex disease involving many systems of the body.
Tate had used sophisticated technology to examine proteins in the immune cells. What he found were numerous changes in the mitochondria – the powerhouses of the cells that produce energy the body needs to function – that help explain the persistent fatigue that sufferers experience.
“Quite remarkably, we found about 50 proteins from mitochondria that were all produced in dysregulated amounts,” says Tate.
He also discovered changes to signatures on DNA that he believes are responsible for many of the neurological symptoms.
There had already been signs that attitudes towards chronic fatigue syndrome/ME were changing. A 2015 report from the National Academy of Sciences in the US concluded it is a serious disease that deserves more medical attention. But still there is no reliable diagnostic test or effective therapy.
The game-changer may be long Covid, the post-viral syndrome affecting many thousands of people throughout the world, which has similar symptoms including fatigue, muscle weakness, muscle and joint pain, headache, low mood and sleep disturbance. Suddenly, research dollars aren’t so hard to come by as, globally, scientists focus on trying to learn more about what is going on and how best to treat it.
Tate’s contribution is a comparative study that he is working on, to see whether the sorts of molecular signatures in mitochondrial proteins and DNA that he found with chronic fatigue syndrome also occur in long Covid.
Biochemist Emeritus Professor Warren Tate.
There have been more localised outbreaks of post-viral syndromes – such as Tapanui flu, named after the Otago town where a number of people suffered debilitating fatigue in the 1980s. Tate says there have been other instances where a particular infectious flu-like disease has led to ongoing problems, including one in northern Iceland in the 1940s and another centred on a London hospital in the 1950s. These have all been small in scale. Long Covid is affecting 10-30% of people who have Covid-19, so is being taken much more seriously. The “all-in-the-mind” myth may have had its day.
The hope is that now we will learn more about what causes post-viral illnesses and how they can be better managed, if not cured. Currently, cognitive behavioural therapy (CBT) and graded exercise – a programme where the amount of physical activity is gradually increased – are the interventions most often recommended. CBT is at best a management tool and graded exercise can actually be harmful. In the UK, the National Institute for Health and Care Excellence has been working to develop new, improved guidelines for treatment, but these have been delayed.
In New Zealand, about 25,000 people suffer from chronic fatigue syndrome/ ME. For many, this is a lifelong condition. Although Tate’s daughter is among them, she has managed to achieve academically and have a child, and he is incredibly proud because he knows how hard it has been.
“As my work has got publicity, I get maybe four or five emails from people every week, and some of them are heart-wrenching,” he says. “They’re so grateful that I’ve found something that has affirmed their illness, although I haven’t been able to find anything yet that can change it.”
Letter to the Editor - Beyond Belief
October 9 2021 edition of the Listener. Awarded Letter of the Week.
I was ecstatic to read that finally chronic fatigue syndrome (CFS) is being recognised as a serious illness (Health, September 18).
Like Warren Tate’s daughter, I had the misfortune of developing CFS after glandular fever. As well as chronic fatigue, I had a disabling headache all day, every day.
In 1989, CFS was indeed regarded as psychosomatic. I went into hospital genuinely believing the professionals were attempting to cure me. Instead, I was consigned to the psychiatric system. My experience defies belief.
At the time I went into hospital with CFS, I was a highly functioning professional with an impeccable work history. In the psychiatric system, I was told I was good for nothing, that nothing I had achieved counted for anything, and that I needed to get off my backside and go back to work.
I was forced to exercise strenuously: Tate has shown that exercise can actually be harmful for those with CFS.
A formal complaint led to an inquiry and after many years, an out of court settlement. But the end result of not recognising post-viral syndrome was a genuine condition, and subjecting me to abusive “treatment”, was that I never worked again.
It is ironic that it has taken long Covid for research money to finally be directed toward post-viral conditions.
I applaud Warren Tate for battling on despite the lack of funding. Hopefully, his discovery that CFS produces changes in the mitochondria and DNA will lead to worldwide interest and to helping those battling all types of post-viral illnesses, not just long Covid. This would be life changing for patients like myself.
Name and address withheld.